"When they all make you feel like a problem girl, remember, you're no problem at all." Rob Thomas, Problem Girl

Monday, January 11, 2016

Remember when I said I was waiting to see what The Mighty would do in the wake of our conversation?

Well, I found out. And it wasn't pretty.

I told Vicki and Megan during the call that I was planning on posting my demands and guidelines on my blog. They made no attempt to convince me to refrain from that. They were well informed and should not have been taken by surprise.

So I posted them. And later that night, I got up the courage to post a link to that post in the Mighty Voices Facebook group. I said something along the lines of "I'm probably going to get jumped on by the parents for demanding they write about their kids with respect, so when this hits my breaking point, I'm out of here. Megan and Vicki know where to find me, as do the people in this group who have been willing to listen and learn." I also emphasized that Megan and Vicki were lovely, and that it was many parents in the Mighty Voices group who were nasty and rude to me and other self-advocates.

Imagine my shock when less than ten minutes later, my post was removed and I was removed from the group, as were many others, mostly self-advocates. The supposed rationale for this culling of the group was as follows, posted by Vicki in the Mighty Voices group AFTER removing people and emailed to all Mighty contributors:

Hi everyone,

When we first started Mighty Voices, we designed it to be a place for our frequent contributors to connect and collaborate. We will be making changes to Mighty Voices in the next few weeks as our new community manager comes on board. The first of these changes is that we want to return Mighty Voices to what it was designed to be. For this reason, we are removing anyone who hasn't submitted a story for consideration on The Mighty in the last four months.

Please know this doesn't make you any less a part of The Mighty. We are so glad you're a part of our community, and we hope you continue to contribute to our site. If you have any questions or concerns, just let me know.

Best regards,Vicki SantillanoSenior Editor | The Mighty

Let's say I give The Mighty the benefit of the doubt and take their explanation at face value. What exactly does kicking contributors out of the Facebook group who haven't contributed in four months accomplish? It in no way goes to the root of the problems, not even close. All it does is make the Facebook group easier to manage for them. And as a former Facebook group moderator, I can tell you that when your group is growing, you don't kick people out. You hire more moderators. Hmmm....who suggested that? Oh right, I did.

Contributors were given no warning before being removed. None. Zero. The explanation came after the fact. There was no chance for anyone to redeem themselves by submitting a post in a timely fashion if they wanted to stay in the group. We were punished for crimes we didn't even know we committed.

But what angers me the most is the swift removal of my honest post with no explanation whatsoever. Vicki and Megan have done no moderation whatsoever over the past two to three weeks in the cesspool that is the Mighty Voices Facebook group. Now, all of a sudden, it was as if they realized that they should be doing something. But instead of moderating hateful and offensive comments (see below for some samples), they removed a post that I warned them I was going to write, which wasn't even offensive towards them (the worst I called them was lackadasical and naive, if you recall, and I pointed out some perfectly understandable reasons that they might be that way). I don't know whether the blog post itself upset them, whether it was my direct commentary on Facebook accompanying the post, or something else entirely, because once again, I got no explanation, no apology, nothing.

Meanwhile, posts like this are still up, some in Mighty Voices and some on the main Mighty Facebook page (screenshots posted and described below):

This was in response to the post by a mother, written under her real name, with a photo of her son, and going into detail about her son's bathroom problems:

A partial screenshot of a Facebook thread. Names and profile pictures are blacked out for privacy, with different colors representing the different commentators. The first comment says "Wow tmi I'm glad my parents never posted my bathroom problems to fb". It has ten "likes", All other comments are replies to the original. First one under the original says "It's more than that. Its a story of hope." It has three "likes". Second one says "I'm sorry that all you see in this story is "bathroom problems". Perhaps you need to broaden your perspective a bit to get the real meaning in this story." It has 12 "likes". Next one says "Although it is a great story of a stranger helping someone else, it's embarrassing for her child if and when he does find out mom put the story all over the internet. Kids with Down Syndrome, even in adulthood, have feelings. And if someone pointed out, "Hey, that's the boy from that bathroom story on The Mighty, I'm sure he would be mortified. Even the lowest functioning can get hurt feelings from this. Next comment says "Very true, that's gonna be humiliating for the kid." It has two "likes". Next comment says "There is a bigger picture here people." It has two "likes". Next comment says "Get a grip people! This little boy had Down's Syndrome and Autism and was non verbal! His mother would be more than thrilled if her son COULD read this and be embarrassed! Forget any embarrassment and look at her horrible predicament...being a mother..." The comment is cut off with a "see more" link and has five "likes". Final comment is from the same person who said that it was gonna be humiliating, and says "So what you're saying is that this kid has no right to privacy because of how severe his disabilities are? That's messed up. Every single person has a right to confidentiality no matter what their ability." It has four "likes".

So, in essence, in this thread, we have people saying "People with disabilities have feelings." and other people very nearly literally going "No, they don't."

This next screenshot was part of a comment thread on an unknown post.

Screenshot of a Facebook comment, with name and profile blacked out for privacy. Comment reads "Disabilities are meant to teach others! To serve, to help, to be humble, to be patient. There is nothing wrong with that. Let disabilities inspire." The reply by Kelly Ford (who gave me her permission to show her name and picture) says "Disability is meant to teach and inspire? Could you perhaps be more clear about this point? My son, myself, and others do not feel our "purpose" in life is to inspire and teach solely on the basis of a disability. Most certainly not as a minor child who will grow up and have a digital caricature of ourselves painted permanently online for the "inspiration" of others. Especially in a narrative we did not choose ourselves. Perhaps I have misunderstood....I apologize in advance if I missed something here. Just looking for clarification."

Apparently, I exist solely to inspire people. Silly me, I thought I existed to live my life. This is a complaint I hear frequently from people with visible disabilities in particular and something I encounter often. When I am getting my coffee or going to class or catching a train...I am not there to educate you. I am not there to inspire you. I am there to get my coffee or go to class or catch a train, just like everyone else. No one else has this expectation placed on them that they must be available to satisfy people's every whim every second of every day. Yet, because we are disabled, it is not only expected of us, it is demanded of it. It becomes our obligation, our job, and we are continually expected to do it for free (which is, of course, one of the problems with The Mighty and other sites, though frankly a small problem in comparison with the rampant ableism and inspiration porn that is becoming clearer on The Mighty by the day).

These types of posts (and these examples are truly the tip of the iceberg) promote stereotypes and use disabled people as props for the satisfaction of the able. Demeaning, offensive, and frankly dangerous posts are still up....and yet my honest critique of my phone call with the Mighty editors was removed almost as soon as it was put up. It's hard not to suspect ulterior motives here.

I have to ask Megan and Vicki, what the hell did you think I was going to do? You knew I was going to put my demands and guidelines up on my blog. Did you think I wasn't going to talk about the call itself? Did you think I wasn't going to post it in Mighty Voices? Did you think I was posting it on my blog just for my own amusement? I'm highly confused here.

Obviously, I wasted my time and my breath trying to educate people, including The Mighty editors. I put in my own time, and did a lot of work both putting together my demands and guidelines, and talking on the phone with The Mighty editors (which, incidentally, is a fairly inaccessible medium for me, because phone calls give me severe anxiety). I did all this for free, when I could have spent that time on far more productive things that could actually make me money. I did all this because I thought there was a chance The Mighty would listen. I am beyond disappointed. I am hurt, enraged, and disgusted. The Mighty did not even have the decency to be honest about their extreme indifference and even antagonism towards disabled people. I would have respected them much more if they had. They pretended to care, and then stabbed us in the back with a flimsy excuse and no apology.

It's clear that The Mighty does not care. They disrespected me, and they disrespected a lot of other people, both self-advocates and non-disabled parents. I will be asking The Mighty to remove my pieces and my profile from their site. You do not try to silence me, and yet keep my pieces up on your site for the clicks.

Goodbye, The Mighty. I'm sorry that actual disabled people had the nerve to critique a disability-related site.

Thursday, January 7, 2016

I just got off the phone with Megan and Vicki, editors of The Mighty. We had set up this phone call over two weeks ago and I admit, I was skeptical that it was actually going to happen, particularly in light of the news that The Mighty hired a disabled parent of disabled children to manage their Mighty Voices portal (where authors can submit their pieces). It seemed to me like they were putting the cart before the horse, and trying to fix things before they talked to everyone and fully understood where the problems were. So I was pleasantly surprised when I actually received the phone call, right on time, from Megan and Vicki, and just that simple act made me respect The Mighty team much more.

(For background info on The Mighty controversy, check out the #CrippingtheMighty Storify and this excellent Washington Post article, in which yours truly is quoted!)

Megan and Vicki seemed eager to hear my opinions, particularly in reference to potentially sticky situations (authors using language to self-identify, the use of trigger warnings, etc.) I think they were surprised when I told them that I had already drafted a list of demands for The Mighty as well as a list of potential editorial guidelines. I emailed them my lists and they took the time to read through them while on the phone and to ask me to clarify relevant points.

All in all, throughout this process, I've found Megan and Vicki to be mostly well-intentioned and eager to learn, if a bit naive and somewhat lackadasical, especially when it comes to moderating the cesspool that is the Mighty Voices Facebook group (a private Facebook group for contributors). However, they may simply be overwhelmed. As someone who moderated a Facebook group for over three years, I certainly know the difficulties of moderating, especially when arguments happen and turn nasty. The sheer drain of it was a large part of the reason I stopped moderating and even left the group altogether for a few months.

In any case, Megan and Vicki have certainly been better than most of the nondisabled parent contributors to The Mighty, many of whom have formed their own blog where they can presumably be free of actual disabled people, who might get in the way of the credo that a child's disability is ALL. ABOUT. THE PARENTS.

However, a phone call means nothing if it's not followed up with action. Where we go from here is dependent solely on what The Mighty does. I know I'll be watching. I also told Megan and Vicki, point blank, that unless I'm comfortable with the changes, I will not be submitting any more pieces to The Mighty. I doubt that the changes will be so radical as to make me feel comfortable submitting to them again, but I'm not ruling out the possibility of being pleasantly surprised.

Below are the list of demands I wrote for The Mighty, as well as the editorial guidelines I drafted. Megan and Vicki know that these are being posted in the interest of transparency and accountability. Feel free to chime in in the comments with any demands or guidelines you think should be included.

List of Demands for The Mighty

Publicly
make available all financial records on The Mighty website.

Pay
contributors for their work (suggested rate of $50 per republished article and
$75 per original article). Compensate
writers an extra $25 if their piece is picked up by another website.

Establish editorial guidelines for pieces
submitted and encourage contributors to edit their pieces if they do not meet
those guidelines. (Sample editorial
guidelines below)

At least half of the Mighty staff should be
people with disabilities, and at least half of those should be people with
disabilities who are not parents (25%
people with disabilities who are not parents).

Specifically hire at least one person (preferably
disabled, can be a disabled parent of disabled children) to review submissions
as they come in and offer editorial feedback.

Establish guidelines for what is shared on TM’s
social media pages similar to the editorial guidelines (see I Am Norm’s social
media guidelines).

Make the Mighty Voices Facebook group a safe
space by clearly outlining a list of rules (can be similar to editorial
guidelines – no violating children’s privacy (unless it’s specifically stated
that the child has given their permission), no harmful language, trigger
warnings and image descriptions. Establish
a clear list of consequences for breaking the rules (such as a three strike
policy). Specifically hire one disabled
(non-parent) person and one nondisabled person to co-moderate Mighty Voices
group, with potential for more moderators hired as needed. Moderators can refer difficulties to the
editors if things escalate to a point where they no longer feel comfortable
handling it.

Establish a peer review process for parents
writing specifically about their disabled children (can be used at the
discretion of the person who is reviewing submissions – obviously a parent’s
experience is going to overlap with their children’s to some extent, but if
they are solely writing about their children, rather than parenting, peer
review is needed). For these types of
pieces, as well as anything that could be controversial, one disabled
(non-parent) person and one nondisabled parent will review the submission and
offer feedback. If one or both of the
reviewers decide that the piece should not be published, the piece must either
be edited to bring it more in line with TM’s guidelines, or rejected
completely. Peer reviewers will be
compensated $25 for their review.

Reach out to disabled-run and disability
activism groups such as the Autistic Self Advocacy Network, National Council on
Disability, etc. to partner with.

Editorial Guidelines

Use either
people-first language (people with disabilities) or identity first language
(disabled people) if no preference is stated.
For specific communities who have a history of preferring one or the
other, default to that if no preference is stated. (For instance, the Deaf community and the
Autistic community both generally prefer identity first language. However, those with intellectual disabilities
tend to prefer people first language.
This is not a hard and fast rule, but it is known that a majority of
people in those communities prefer that language.) If the person you are
writing about (if you’re writing about another person) or yourself (if you’re
writing about your own disabilities) has a preference, use that
preference. Never use terms like “special needs”, “retarded”, “wheelchair bound”,
“confined to a wheelchair”, or “differently abled”. Those terms are disrespectful and do not
encourage disability acceptance and pride.

Rule of
thumb: if you wouldn’t share it about someone else, don’t share it about a
disabled person. This includes
embarrassing details such as bathroom needs, or sharing about someone in a
difficult moment without their permission (such as videoing a meltdown and
posting it). If it’s something
potentially embarrassing or could be used against someone later on (like in a
job search), and you have that person’s permission to post, indicate that at
the beginning of the post.

Avoid
inspiration porn. This is a story
(or an image, or a video, etc.) that objectifies a disabled person in order to
make a nondisabled person feel good.
Examples of this are applauding a nondisabled person for doing something
nice for a disabled person, without the disabled person’s consent or input,
platitudes like “the only disability is a bad attitude”, and similar
sentiments. Make the disabled person an
active participant in your story.

Include
image descriptions and trigger warnings, if needed. Image descriptions are a short
description of what a picture looks like so that those who are blind or
visually impaired can access that content.
Trigger warnings are warnings at the beginning of the piece that content
may be triggering for people who are victims of trauma or who have specific
phobias. Trigger warnings are not about
“political correctness”. They’re about
giving people a chance to choose whether or not to read content that may actually
cause them harm. If image descriptions
and/or trigger warnings are not included in your piece, the editors may add
them.

Make sure
your piece has a purpose.
Complaining is fine, but specific complaints and ranting are usually
more suited for private groups than a public website. What is the purpose of your piece? To shed light on a specific diagnosis? To show how someone accomplished something
specific? Keep your purpose in mind as
you write and make sure that that purpose shines through.

Disability
is difficult, but it’s not just difficult because of symptoms. If your piece discusses how difficult it is
to be disabled or to be a parent of a disabled person, keep in mind that environmental barriers can be much more
disabling than biological symptoms, and include those barriers in your
piece. This is the essence of the social
model of disability, which says that disability results from the interaction of
a biological impairment (the
diagnosis of cerebral palsy, autism, etc.) with environmental barriers.

Make sure
you’re not using humor at someone else’s expense. Humor is great, but not when you’re using
it to put someone else down or make someone else feel like you’re making fun of
them. Make sure your humor is fun for
all.

These guidelines were developed in conjunction with Carly Findlay of Tune Into Radio Carly, and Nora Ruth of A Heart Made Fullmetal. These guidelines and demands are not to be used without crediting Cara Liebowitz and linking back to That Crazy Crippled Chick.